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BMC Health Serv Res. 2019 Jun 4;19(1):355. doi: 10.1186/s12913-019-4196-9.

Co-design of a patient experience survey for arthritis central intake: an example of meaningful patient engagement in healthcare design.

Author information

1
Faculty of Nursing, University of Calgary, PF2237, 2500 University Drive NW, Calgary, Alberta, T2N 1N4, Canada. ecarr@ucalgary.ca.
2
Pan-SCN Manager, Strategic Clinical Networks™, Alberta Health Services, 10030 - 107 Street NW, Edmonton, Alberta, T5J 3E4, Canada.
3
Faculty of Nursing, University of Calgary, PF2237, 2500 University Drive NW, Calgary, Alberta, T2N 1N4, Canada.
4
O'Brien Institute for Public Health, University of Calgary, 3280, Hospital Dr. NW, Calgary, Alberta, T2N 4Z6, Canada.
5
Arthritis Research Center, University of Calgary, HRIC 3AA20, 3280, Hospital Dr. NW, Calgary, Alberta, T2N 4Z6, Canada.
6
Cumming School of Medicine, University of Calgary, Health Research Innovation Centre (HRIC) - 3C56, 3280 Hospital Drive NW, Calgary, Alberta, T2N 4Z6, Canada.

Abstract

BACKGROUND:

To describe the process of patient engagement to co-design a patient experience survey for people with arthritis referred to central intake.

METHODS:

We used a participatory design to engage with patients to co-design a patient experience survey that comprised three connected phases: 1) Identifying the needs of patients with arthritis, 2) Developing a set of key performance indicators, and 3) Determining the survey items for the patient experience survey.

RESULTS:

Patient recommendations for high quality healthcare care means support to manage arthritis, to live a meaningful life by providing the right knowledge, professional support, and professional relationship. The concept of integrated care was a core requirement from the patients' perspective for the delivery of high quality arthritis care. Patients experience with care was ranked in the top 10 of 28 Key Performance Indicators for the evaluation of central intake, with 95% of stakeholders rating it as 9/10 for importance. A stakeholder team, including Patient and Community Engagement Researchers (PaCER), mapped and rated 41 survey items from four validated surveys. The final patient experience survey had 23 items.

CONCLUSION:

The process of patient engagement to co-design a patient experience survey, for people with arthritis, identified aspects of care that had not been previously recognized. The linear organization of frameworks used to report patient engagement in research does not always capture the complexity of reality. Additional resources of cost, time and expertise for patient engagement in co-design activity are recognized and should be included, where possible, to ensure high quality data is captured.

KEYWORDS:

Arthritis; Co-design; Patient engagement; Patient experience

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